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Okay, does someone want to tell me where July went? Time flies when you are a stress case!! Well as Steve would say "the beat goes on". Anyway, the cancer camp had it's high and low points. Alex's balance is off and he did not like the gravel terrain, so he wanted to be carried everywhere. That gets old after a while, especially when the request is accompanied by a temper tantrum of sorts. The high points consisted of Alex eating marshmallows until his tummy hurt, meeting families with similar circumstances, cool weather, no bugs and the absolutely beautiful scenery!! This camp at Eagle Lake is the nicest I have ever visited. Our cabin was right off the lake edge. Steve played some disc golf while Alex, Zoe and I played on the beach. Saturday night we played 20 questions with our Q20 game by lantern light in the cabin. We had a lot of fun letting Alex answer the questions. His standard response became "sommmetimes". It was good for everyone to get away for a while. We left early Sunday morning, had breakfast at Village Inn and headed home. Steve has a very busy week ahead and needed to get a head start and Alex was ready to go as well.
Steve and I think we have figured something out about Alex and his moods. It would seem that on the third day following chemo Alex's mood takes a dive toward sadness, weariness and outright crankiness. I hope now that we can predict the situation, we'll be better able to handle the consequences. One can only hope!
Also, we realized this morning that this is Alex's last week at his school. Alex has been a student there since he was four months old. Alex is leaving because he won a lottery spot into our neighborhood DPS school which is also a Montessori, dual language school. His best friend, Esther, will be in his class and Alex is excited to start class at the end of August. We are sad to leave Alex's classmates, but he'll still be around to help me pick up Zoe (hopefully, if we can swing it financially).
My boss has made me an offer I can not refuse. I'll be on the job once a week until we are done with chemo. I do work for the best company in Denver!!! This will allow me to keep in touch with the workplace and take care of the kids while getting Alex all the therapy he needs. I am so grateful to everyone at work since this will definitely change things up a bit. I am looking forward to starting my new schedule this week. Thanks everyone!!! You are the BEST!!
Well I have a list of calls to make. I have just got to figure something out with Alex's sleep. He is so very restless at night and the night terrors are not diminishing. Sleep is such a luxury nowadays! I try to get up during the night so Steve can be rested but I also know this deprivation can not continue for much longer. Hopefully, naps will become part of the new routine!
I hope everyone is staying cool. My hometown, OKC, was on NPR this morning. They have had 17 days of triple digit temperatures with no relief in sight. I knew there was a reason I left Oklahoma! Even though the kind, generous souls there are unmatched anywhere else on earth.
More later, have a great day and God bless.
G
I woke up this morning more rested than I have been in a long while. Alex was in the bed and Steve was gone. I vaguely recall Alex tapping me on the shoulder asking if he could sleep in the big bed. I do recall being up with him twice in 15 minutes after turning off the light at 11pm and being very frustrated. Then I think the weariness hit and knocked me out. Until just a few minutes ago, I thought Alex had slept through the night (mostly). That is until Steve told me he had been up with him at least two times. Oh well, at least one of us got some rest. =0)
Alex had a pretty good day yesterday. He expressed some anxiety when the butterfly showed up but after that was a real trooper. Our nurse, Vicki, even gave him a new Candy Land game.
Chemo started nearly an hour late so the neurosurgeon, Dr. Handler, came to the infusion room to check out Alex. He said everything is fine and we should see him in 3 months. Good news!!
Alex and I ate at the Red Wagon Grill at Children's after chemo then picked up Zoe from school. I had a whole 20 minutes at home before I had to leave for my appointment. Alex's mood was very good yesterday until he got tired and had to go to bed. He did not eat any dinner either. I think that will be the norm for a while at least.
I just wanted to update everyone. I know the positive energy you all send Alex on Thursdays really helps him.
God Bless and have a great weekend!
G
I'd like to start this post with a thank you to you all. Your comments, cards and thoughtful conversations are a Godsend to our family. I don't know how to explain how much it helps to know that others are out there, experiencing this with us and holding us in their prayers and good thoughts. Thanks just does not seem like a big enough word here, but Thanks nonetheless!!
Yesterday and today have been good days for Alex. He has seemed to really enjoy his return to school and just lights up when he is around his friends. The Primary students at MAC had a field trip to the Nature and Science Museum's Planeterium. Everyone who saw me in the lobby told me how much fun Alex had playing in the fountain. It was great to hear that he did so well without Mom or Dad around. I had planned to go but the date was moved due to electrical blackouts at the museum last week and I already had a doctor's appointment set for today.
Steve's great friend, Rick Harper, is in town on business and stopped by last night for dinner and to catch up. I have not seen Rick since he was in our wedding. I must say he was a sight for sore eyes! We ordered in Indian food and sat on the front porch just talking about life - future, past and present. It was like we'd been neighbors for the last five years. I must say we are blessed with great friends. You know who you are!!
Tomorrow is chemo #3 and Alex is asking about the pokes. We told him that there will be no pokes just the "butterfly" and magic cream. The "butterfly is the needle they put into the mediport. The magic cream numbs the area so he does not feel the poke, just a little butterfy bite.
After chemo tomorrow we have an appointment with Dr. Handler. It will be 30 days since surgery (time flies) and this was scheduled when we left the hospital. I completely forgot about it, thank Goodness they call with reminders! Then I have my first mammogram at 4p. I normally would be quite worked up about this but have not had the time or energy to work myself up so I'll just go and hope for the best. Just for the record I do believe in a merciful, loving God!
We have signed up to attend a Cancer Camp at Eagle Lake this weekend. It is usually a church camp, so I hope the bible beating won't be deafening. Alex has wanted to go camping for quite a while and I think we can handle one night under the stars! There are lots of activities for kids and it will be good to get into them thar hills for a while! I can't wait to do some star gazing. Alex wants us to pack marshmallows!!!
Well sleep has still been elusive the last two nights. I told someone today I think I'm just getting used to it. I deplore all the things we have to get used to now; but everyday seems to get a tad easier than the last. I have started working out every other day just so I don't explode with stress. Hooray for endorphines!!
I hope everyone reading this is blessed with a wonderful weekend and hugs and kisses from a loved one!
God Bless.
G
Since the last post, Alex went to the Zoo and did not have a good time. He's just not the same happy-go-lucky kid anymore. I hope happy Alex returns soon though. Zoe has had fevers over 102 degrees, peaking yesterday at 104. Alex complained his arm was hurting and I noticed some swelling in his right forearm, so I called the hospital. They wanted to see him because the mediport may have been causing the swelling. Dr. Foreman checked Alex out himself and said it was not the mediport and perhaps a side effect of chemo treatments. He also said that we'd be in the hospital alot for a while (indicated months!!) until this became more familiar. I can't tell you how unnerving that statement was for me.
Alex has his first physical therapy appointment today. We are hoping it will be productive and fun at the same time.
Zoe is doing better today. Hopefully, she will return to school tomorrow.
Have a great day!
G
Daddy's home!!! Well, Friday is a blur. Steve was home but had conference calls through the late afternoon. We all went out for Alex's favorite meal at Macaroni Grill. He just loves the cheese graters there!
Saturday we took both kids to the pediatrician. Zoe had a high fever during the night and Alex coughed and choked all night. The doctor said they both have the same viral infection and to call her if Alex has a fever. Zoe is quite miserable. She is also teething and dealing with a runny nose that is now raw from wiping. Alex seems to be doing better though. We gave him some Night Rest PediaCare last night. Yesterday we also bought Alex a Spiderman Ready Bed. It is an inflatable bed/sleeping bag. We put it in our room and told him if he woke up and wanted to come to our room it would be there for him. He ended up in it some time after midnight and rested well until morning! Can you say Hallelujah!! For the first morning in a while I did not wake up tired. I still could use a nap though to restore my sleep bank reserves.
Well, we had hoped to go to the Denver Zoo today, but Zoe is still running a very high temp even after meds. So it looks like Alex will be getting some "daddy and Alex time" today. I'm okay with that since there is laundry and many other chores to do here at home. Oh yah, and that nap! =0)
I am supposed to return to work tomorrow but most likely won't be able to make it. Steve is facing approaching deadlines on his projects and since Zoe still has a fever, she can not go to school, therefore I will need to be with her. I know I need to get back into a routine. It is just so hard to get used to the "new normal".
Love to you all.
G
Well after much ado, I reverted the settings so that anyone can comment on this blog. You just have to go through a word verification. I apologize if this was a huge inconvenience for anyone.Last night had to be one of the worst nights since diagnosis. I believe Alex was retraumatized by the cat scan therefore did not sleep well. It took him a while to get to sleep then he started the crying, kicking, etc. right as I was headed to bed. All of this commotion woke Zoe up so I got to bed (with Alex by my side) at midnight. Alex proceeded to kick and cry all night. It was brutal. I woke up more tired than when I went to sleep and I think Alex did too.Nonetheless, we got to the hospital on time. The Chemo Room was very busy and we did not get the private room we had last week. We were given the choice of large recliners in one of the Avalanche Room's corners. We picked one that seemed pretty secluded, but I found out later was very deceiving. Anyway, I had to combat some claustrophobia, crankiness and weariness to get through the first hour (as did Alex). After that though, we finally got settled in and got through Alex's second round of chemo. Alex did very well but still does not like the pokes.The doctor today did not offer much to get Alex to sleep any better. Seems this is very common for kids after diagnosis, surgery and chemo treatments. We were urged to get into a good routine and stick to it. I also want to pursue other relaxation methods for Alex. Perhaps massage, biofeedback or acupressure will help him get some much-needed rest. (Jerry, I can hear your Boulder jokes now!) I am leery of trying meds at this point. His poor system is already going through so much.Alex can't wait for Steve to be home. He wants to know what kind of toy he picked out for him! Alex had a good evening, Karlyn Vasan dropped by with dinner and her sons. Alex really perked up when Vikram came in. We hope to have a real play date with them soon. Joy was also here this evening and helped out with laundry and the kids. Our friend Nadine also came by and we drank some beer and ate Karlyn's wonderful Mexican Chicken dinner while the kids devoured Super Sponge Bob Mac 'N Cheese! After dinner was bath time and then bed. Alex talked and sang to himself for an hour or so and has just fallen asleep. While writing this he has screamed twice and needed consoling. It looks like another restless night.If anyone has any ideas that would help Alex sleep, please let me know. I'm willing to try almost anything. I am going crazy though so don't take advantage of my impaired state of mind!Thank you for your comments. I really enjoy reading them and always feel renewed for another day.Sweet dreams!G
Ok, well I just figured out that the last blog has the wrong weekday in the title. Sorry if I confused anyone. Also, since I just received 188 spam emails, I have changed the settings so you have to be a registered user to post a comment. Please don't let this hinder you from leaving comments. That would totally defeat the purpose. It is just sad that some people use blogs like this as a marketing tool. Oh well, I figure their lives are shallow and void of meaningful relationships so they must have no clue! Okay, I'm off my soap box.
Today started off okay and ended okay but took an interesting turn at midday. Alex woke up in a very sad, upset mood. He kept saying "Mommie, I miss my Daddy" over and over again. We got to school and he seemed to be okay when I left. I spent the morning working on several different projects and got to Alex's school in time to catch a prime parking spot in the shade. I was in the lobby when Alex's class began to walk by to go outside. As soon as he saw me, he started getting tearful and asking for his father again. We then went to pick up Zoe and spent a few minutes in her room playing ball with her. When we left, we made a stop at my office and then headed home. Alex started crying in the car and complained that his head hurt. As soon as we walked in the door, both kids started crying. Our neighbor, Heather, was at the door to watch Zoe as Alex and I went to Children's for his physical therapy. Heather came in and Zoe got a clue that I was leaving and cried even louder. Alex was crying for medicine that I could not get to him soon enough. So I gave Zoe to Heather, got Alex his Ibuprofen and two seconds later, he starts throwing up.
Okay, so when we left the hospital they said if Alex has nausea and/or headaches I should call. So in addition to both of these symptoms, I had noticed at the school that his incision was raised and swollen more than usual. So I got Alex's shirt changed, showed Heather where the diapers were and headed to Children's. On the way, I called our nurse in Neurooncology but she was not available, so I called neurosurgery. By this time, we were in the PT clinic waiting for our therapist. Jane Freeman in neurosurgery had examined Alex a week ago and said we could come down and she'd look at the incision. So we met the PT therapist and headed to the 3rd floor. Jane looked at Alex and after some discussion with me then Dr. Handler decided that Alex should have a catscan. Aughh!!
So we head down to the first floor to radiology (where this all began, and my least favorite department) and waited. Alex and I went to get a root beer and snack. His appetite has been poor all day, so I thought I would keep offering different snacks. Anyway, after a significant wait, we were called back. Alex immediately started getting anxious. (Who could blame him?) We got to the catscan room and he really did not want to lay down on the table. Finally, after much coaxing, he was positioned in the machine. I was able to hold his hand the whole time and he actually did very well. He wanted to cry but when I told him that crying would only make it last longer, he was able to compose himself. What a great kid!!
So back to the third floor. Jane called us back to look at the scan and pointed out that some spinal fluid has accumulated on the incision. She also stated that this is normal since he is more active and upright and not of much concern. So we were sent home.
Alex immediately took a nap and Zoe and I shared some time together. We missed out on our dinner with our friends and Alex asked me at 9p why we did not go play with Samantha. Hopefully, we'll make that play date soon.
While we were leaving radiology there was a young couple who obviously had just received very bad news. The mother was holding her baby so close and her eyes were so red from crying it broke my heart. I just wanted to make it all go away for them. Being at the hospital and seeing things like this and very sick children really affects you deeply. I am learning how to deal with being helpless. When Alex cries in the middle of the night and is inconsolable, I'm helpless. When he asks for "no more pokes', I'm helpless. When he can't walk, talk, drink like other three year olds, I'm helpless. It is a very difficult situation to get used to, especially for such a control freak like me! I'm sure it will get easier, but is that a good thing? I guess we'll find out.
So tomorrow is chemo round number two. Whoo Hoo! I'm dreading it. I try to focus on the positives, like the shared one-on-one time with Alex, but that is not really how or where a parent wants to spend "quality" time. The good thing is that Steve will return from his trip tomorrow!! I'm trying to think of some fun activities for us to do this weekend as a family, but maybe just being home and getting some rest is what everyone needs now. We'll see. I must say I have become much more spontaneous in the last month. No time like the present!!!
Ok, please let me know if being registered to leave a comment is a hassle. Thank you all for your continued support. It means alot to us all.
Good night and God bless.
G
Well it is 10:15pm and I should be heading for bed, but I just had to get this down. Alex has been in bed since 8p and he just called me back to the nursery to ask me to be sure to add SpongeBob Squarepants Super Mac 'n Cheese to our grocery list. It probably loses something in the translation, but it made my heart sing! Yes, I wish he were asleep, but at least he is not crying in terror, and he is showing interest in food again!
I actually had a very productive day. I got a work out in and several "to do's" off my list. Joy came by for a few hours this evening to help out with dinner and bath night. I met her when she was an assistant in Zoe's classroom and can't rave about her enough. I feel so comfortable with her and she is great with the kids. It seems like she's been with us for years. It was very nice to have some help this evening too. When she came in Zoe became very upset. I am pretty sure she thought I would be leaving and therefore demanded to be held for the next 30 to 40 minutes. She finally relaxed and was soon playing with Joy as Alex and I made chocolate chip cookies together. We love to bake together and it gives him an opportunity to practice his manual dexterity. Then we had a wonderful meal and more play time then baths. Alex was reluctant (putting it nicely) to get in the bath and then did not want to get out. Zoe was exhausted and fell asleep as soon as she was put down.
The Benadryl did absolutely nothing for Alex last night and I did not give it to him this evening. I truly believe his mind is struggling to reconcile all that has occurred in the past month. I know I would be terrified if it were me. I can't imagine how a mind of three and a half years processes this. All I know is that we are doing everything we can to assure him he is safe and loved and will be okay. It is hard sometimes though. I have wanted to just cry with him on more than one occassion.
Well, as that last paragraph indicates, I have been advised to get some counseling. My doctor is researching some candidates and I hope to hear from her soon. I really just don't know when I will have time to visit with a therapist. I guess it will all work out somehow.
While Steve is gone, we are doing our best to keep busy. We have dinner plans with some friends that have children tomorrow and also Alex's first physical therapy appointment in the afternoon. I can't wait to see him more stable on his feet and stronger with his right side. I have also made a audiology appointment for next month. The neurosurgeon said that while monitoring Alex's brain during surgery, they found his hearing diminished on the right side. I whispered in Alex's ear the other day and got no response. Perhaps he was just practicing for his teenage years by ignoring me?!
Alex told me tonight that he does not want to go back to the doctor's. It will be difficult for a while to get him into a routine, but I know it will happen. I remember when we went to Children's Hospital for the first time to get the MRI. I told Nadine then "I really don't want to get to know this place". Well, I'm sure I will be able to give tours and put names to many faces by the time this is all over. What am I saying, it will never be over. I still have not come to terms with the permancy of this situation. Alex will have to have MRI's for the rest of his life. After this tumor is dealt with he has a 50 / 50 chance of reoccurence. So the sooner I get used to it the better, huh?
Well, this posting seems to have taken a different turn than what I intended. I think it has become a journal as much as a means of communication. I hope I don't regret that anytime in the future. I just feel better letting everyone know what this really looks, feels, tastes and smells like. It helps me feel like I am dealing with it. So let's return to the positive. Alex wants SpongeBob Squarepants Super Mac 'n Cheese!! Isn't that just the best?!
Gwendolyn
Hi all. Well the weekend was HOT!!! Zoe got her first haircut at 14.5 months and now has very cute bangs with curls on her neck. We had friends over for dinner Saturday night and drank a few, much needed margaritas. Yesterday, we headed for the hills to O'Fallon Park past the Red Rock Ampitheater in Morrison, Colorado. We found a nice shady spot on the river and played for an hour or so before visiting our dear friends Jami and Gerry Boarman in Evergreen. It was a nice relaxing day out of the blistering, record setting heat of Denver. When we returned home at 7p, the temperature was still 20 degrees hotter than at the Boarman's home.
I wish I could say that we have gotten some sleep, but that would not be the case. Alex is still very restless and cries often during the night. I just got off the phone with the neurooncology nurse and she had to ask Dr. Foreman what to do. The first directive is to stop giving Alexander the antinausea drug and to give a dose of Benadryl at bedtime. Alexander is still complaining of an upset stomach. "Mommie, my tummy feels like I am going to spit up". So I continued the medication. The nurse said this and the "trauma" of hospitalization combined with surgery could be causing his night terrors. I sure hope they are right and it is the medication. We all need a good night's rest.
So Steve left for a business trip this afternoon. We will all miss him horribly. I just hope he can get some rest while he is gone. My focus this week is to figure out how the rest of the year will play out. No small task I must say!!
Alex is not eating much these days and I am afraid he is losing too much weight.
When Alex does not finish his waffles, you know he is not well!! I'll keep trying his favorite foods. If this continues much longer they will have to test his swallow mechanism to see if it has been damaged, thus causing a physiological reason for not eating.
I can't tell you how nice it is to have the postings available to read at any time. Words do have power and yours have helped me continue on with hope and comfort. Thank you all.
P.S. The picture attached was taken yesterday.
Well, it's over! Round 1; just 59 to go!! Alex was very anxious about the "poke". Even though it did not hurt him, he was so scared and worked up that I had to restrain his hands. Luckily his nurse was fast and very discreet. He never saw the needle.
Initially they gave Alex fluids and antinausea medicine for an hour. Then the chemo for 2 hours. We left at 1:20p and then had lunch in the cafeteria with Steve and Zoe. Steve was able to work from home today and has been a lot of help today.
Alex took a nap this afternoon. He was pretty chipper while playing with the nerf gun he received from a former brain tumor patient today. This little boy and his mother had a bag of toys they were giving to all of the patients. It was very sweet and heart warming.
Alex did not eat dinner and is running a fever. We called the hospital because they said it could mean he is having a reaction to the chemo i.e. blood infection. So we can not give him any otc meds to reduce his fever. We just have to monitor it all night. He has been very weepy this evening and I don't think anyone will get much rest tonight.
I have to go sit with him now and try to help him feel better. Wish me luck!
Gwendolyn
Well it is the morning of the first chemo treatment. Last night was very difficult for me. I picked a fight with Steve just so he'd know I was upset. I would not recommend this method of communicating though. Finally, after having a wonderful dinner provided by another family at Alex's school and shared with our wonderful neighbors, we were able to talk about our feelings. I still don't really understand all of the emotions, fears, anxieties that I have but I do feel better this morning. So perhaps just talking it out did help some. Other moms have come up to me and been very complimentary and amazed at our ability to handle this situation. I don't feel like I am doing anything extraordinary. I truly believe any parent will do "anything" for their child(ren). This is just one of those "anything" moments (that will last a lifetime). My children give me the strength to get up in the morning, to smile and to laugh. After Alex was born, I realized that the greatest gift of having children is that they teach you (force you) to be in the moment. When I am with my children it is so easy to focus on them and just be their mom. If I drift and start thinking, they immediately do something to get my focus back on them. So perhaps that is why this morning has been easier.
Alex has alot of anxiety about getting "poked" this morning. Even though we assure him it won't hurt. (We'll apply a topical anesthetic ointment to his mediport that will numb the area.) So we are trying to focus on all of the fun things we'll get to do during chemo (surreal statement!!). I have a bag full of some of the wonderful gifts Alexander has received from you all. They also have lots of activities in the chemo room as well. I know it will be okay, just anxious and ready to have it over with.
Alex understands that the chemo is medicine to make his bump go away. He also understands that when the bump goes away he will be stronger and able to use his right hand and leg more. If there is a hero in this family it has to be Alexander. He is so amazing and wonderful. As anyone who knows him knows.
I want to thank everyone who has sent cards to Alex. He had three cards to open this morning and absolutely loved it. Thank you, thank you, thank you!! He is still caring one of them around with him!!
I also want to thank Jerry Lockwood and my co-workers at JAG. Jerry offered me some more time off. Which means the other adminstrative staff will be doing extra work so that I can stay home for a few more days. I hate to put this burden on my friends at work, but Steve will be traveling next week and both Zoe and Alex are very needy and cuddly these days; so I will need the time to take care of things while they are at school. Zoe's snuggle-bunnyness has increased threefold since this all started. She just wants to be held all of the time, which is wonderful and tiring at the same time. So thank you all for everything. I can't wait to get back into a normal routine!
Okay, well time to get the cream on Alex. Hope everyone has a wonderful day! Kiss and hug a loved one for me!!
Gwendolyn
I really don't know where to start. Alexander continues to improve every day and has even put on some weight (2 pounds!!). He went to school yesterday for his usual half day session. It was not the easiest drop-off but when I picked him up on the playground he was riding a trike and all smiles. It was very good to see. Then we had a doctor's appointment that afternoon. The nurse practitioner in Neurosurgery said his incision looks "beautiful". The sutures will dissolve and he should be good to go. Alex even got a new book out of the deal.
Alex then came home and slept through dinner well into the night, waking at 8:20p for dinner. I just can not bring myself to wake him up, but we need to get back on a regular schedule. Alex's night time sleep is very restless and we are up every 30 minutes or so trying to comfort him and stop his crying. Eventually, we just bring him to our bed. He then proceeds to push his dad out of the bed by spinning or kicking. I am desperate for a good night's rest at this point. I can handle quite a bit, but when I miss sleep my bandwidth shrinks.
I returned to the office yesterday. I had to psyche myself up just to get out of the car and walk to the elevator. I had alot of anxiety about being able to act normally and do my job. After crying at the first "How are you?" I felt better and was able to actually get some work done.
Today Alex woke up very dizzy. I called Neurosurgery and spoke to the same nurse that saw us yesterday. She said to keep a close eye on him to determine if any other symptoms show up.
I have used this morning to get numerous items off my list. Perhaps a nap will follow. Thank you all for your continued support. I often reread your comments just to keep me going. I hope you all have a wonderful day and give someone a big hug just because you can!!
G
It's Friday and Alex went to school yesterday for an hour. He was very anxious and asked to sit in my lap before going to the classroom. When I picked him up he was a different kid! He showed me his bean plant and just talked and talked and talked. We then stopped in at my office and saw everyone there. It was great to see that normal life is still going on and that it is available to me. Alex held court while everyone commented on how good he looked and how great it was to see him up and around. It is wonderful to have Alex home. We are trying diligently to get back into a routine. He has lost some weight and does not seem interested in eating, not even his favorite foods at times. If his weight loss continues, the doctors will check to see if there is a physiological cause due to the cranial nerve damage. I pray it is just a healing process and to be expected under the circumstances. Alex has always eaten in phases so I'm holding onto that thought.
We just got our first chemo appointment set. It is next Thursday at 10am. Each will take 3 hours and he will also start on an antinausea medication at that time. I now have to look into the physical, occupational and speech therapy appointments and get those going. Someone commented that I have a new full time job, I'm starting to believe them. Steve and I are going to switch chemo appointments every other week; it seems too much for one parent to endure alone.
Steve and I did have our date night and it was great. We finally got a chance to process the situation and prior month or so. We talked about how wonderful it has been to have this large community support and how it has really affected us in a very positive way. Thank you all for your continued support.
Steve's sister and brother-in-law returned to San Francisco yesterday evening. They were such a wonderful help and it was great having them in our home. Since, we are tied to Denver for the next 60 weeks (due to chemo) they have planned to return for Thanksgiving. I hope all of our family will come out for the holiday(s) and share in the joy of life that is Alex and Zoe!! BTW, Zoe is officially a toddler now. She wants to walk everywhere, even if she does fall down on every third step!!! It is incredible how resilient kids are!
I just have a few more minutes before I need to pick up Alex. I hope everyone has a wonderful weekend. Kisses and hugs to you all.
G
Well, our prayers and dreams came true Monday night. Alex, Zoe, Steve, Aunt Christina, Uncle Ari and I all went to see a fantastic fireworks display!! Alex really enjoyed the event even though it was past his bedtime. It was great to get out of the house and enjoy ourselves for the first time in a while. Words can not express how much just sitting on the grass with my boy leaning against me, smiling meant to me. It was pure heaven.
Yesterday was a good day, everyday Alex gets a little more flexibility in his neck and starts behaving like his old self. He is only taking Motrin and Tylenol for pain management now during the daylight hours. He takes the Oxycodone at night to ensure a good night's rest. I on the other hand have had some of the worst nightmares of my life in the past week or so. I'm starting to fear sleep. Geez, this is hard!!
Steve, Alex and I went back to Children's today to meet with the Neuro-Oncologist, Dr. Foreman. He explained in great detail the chemo treatments and how the next year will be spent in their "infusion room" once a week for 3 hour treatments. Aughh! Steve was really affected by today's visit. To me it is just what we have to do to make Alex well. We are praying that the chemo works and that the side effects are minimal.
Tonight, thanks to Steve's sis and brother-in-law, Steve and I will go on a date! I really don't know what we'll do or where we'll go and I have a lot of anxiety over leaving Alex, but we need to take advantage of their generosity and kindness and just get a short break for a while. Wish us luck!!!
This morning Alex and I stopped into his classroom just as they were finishing lunch. Alex really perks up when he is around his friends and the kids had a lot of questions for us. We are planning for Alex to return to his classroom tomorrow morning for an hour or so and then we'll just go from there. Our main concern is him falling, but like I said everyday he gets stronger and more flexible. It will also do alot of good for everyone to get back on a regular schedule.
Our first chemo will be next Thursday and every Thursday after that for a while. Steve and I will have to alter alot of our plans but are more than willing to accommodate this schedule.
God bless you all. We are so fortunate to have such a loving, caring and wonderful community of friends. More later.
Gwendolyn
Good Morning, Alex's homecoming has been a busy one. He started having headaches yesterday afternoon and after calling the Neurosurgery doctor on-call, we were told unless he starts experiencing nausea and high temperature; it is all just related to the pain of the incision. The doctor said this is one of the most painful surgeries out there. Alex's friend and neighbor came over yesterday afternoon as well and they had a very good time. Alex will not turn his head yet, but he was walking well on his own. He even picked something out of a basket!!
Steve's sister and brother-in-law arrived yesterday just hours after my mom, sister and nephew departed. It's very nice to have family around. Zoe is finally meeting her aunt and uncle from San Francisco.
Alex may return to school on a limited basis. We will just have to see how he is doing. I told him he'll have to start toileting himself before that can happen. Just a few minutes ago, while eating breakfast, Alex said "Being sick is a bad thing, Mommie". So I think we are all ready for Alex to feel better.
We go back to the Neuro-Oncologist tomorrow morning. Steve will have to return to work and I'll stay with Alex for a time, at least until he can return to school's half day schedule.
I just want to say to thank you again for everyone's support. Our prayers are now centered on Alex's healing via chemotherapy and a return to normalcy for our family.
Alex would love to set up some play dates with his friends, so if you can give us a call!!
Gwendolyn
Since the last post, Alexander has made great strides. He moved into a private room (Thank you so much Dr. Jody!!!!), took a wagon ride around the hospital and ate some noodles and cheese. I got to the hospital at 7:15p to relieve Steve who needed a break. Nadine was there, straight from the airport and we rolled Alex all around the hospital. Instead of wheel chairs, they provide red wagons. Alex was propped up with pillows and kept asking to roll some more. He did not move his head at all this evening but he was very glad to see me, so much so he started crying. Nadine left us in front of the magic ball machine. Alex was sitting in my lap watching the balls work their way through the maze. We stayed there then wheeled around some more then returned to his room. He really is sick of the hospital bed and just wanted me to hold him. So I gladly did.
Then Dad came in with our nephew, Evan, and Zoe. Zoe immediately had to be in the chair with Alex and me. Evan found a toy Jo-Nell delivered, along with many others from Alex's schoolmates (thank you all, too). It is a fuzzy blue monkey with long arms and legs that velcro at each end. Evan started making monkey sounds and wiggling it in Alex's face. For the first time since Wednesday morning, I saw Alex crack a smile!! Even though he won't move his head, he and Evan then proceeded to have an argument over who has the biggest germs. I think Evan won since he is five! I guess having kids around really helped Alex forget his misery.
Alex then ate some noodles in the chair all by himself. This is huge because the Occupational Therapist that visited earlier wanted him to be at a 45 degree angle for eating and he was at about 60 degrees. Steve and I were thrilled. Zoe had a great time rolling on the hospital bed and playing with (read as "eating") bubbles. Alex wanted back in my arms after eating; so I gladly accommodated him while Evan and Steve went to the wishing well. When they returned, we gave Alex a ten minute warning of our departure. He started to cry, but I promised him I would be back when he awoke in the morning.
I can't tell you what a roller coaster ride this day has been. I'm sure it is obvious to anyone reading today's blogs though. I am very encouraged by Alex's chatter with his cousin this evening and look forward to hearing my boy ask "Mommie, can we look for Herbie cars" any day now!! Thank you all for your prayers and positive energy. It has helped Steve and I immensely, not to mention dear Alexander.
Gwendolyn
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